Brian Shane Regions is dying.
Medications sustain the 34-year-old for now, but a heart transplant is his only hope of a cure for his congestive heart failure -- as is the case for the thousands of others who suffer from irreversible heart damage.
But Regions lacks health insurance and receives inconsistent care for his condition. He said some of his doctors have casually suggested that he should be on the waiting list for a new heart, but not one has helped him pursue it.
"There's really nothing I can do," said Regions, a freelance photographer in Campti, La. "I don't have the insurance to do it right now. They are treating the symptoms. I'm managing, but I know I'm slowly getting worse and it's not going to get any better."
It's the harsh reality of the organ transplant field: Patients who are uninsured or unable to pay are sometimes denied lifesaving treatment because hospitals can't afford to foot the bill for the surgery or the extensive recovery.
And while inadequate health care is a big problem in general for uninsured Americans, organ transplants raise unique ethical issues, said the authors of a report in the Journal of the American College of Cardiology. While the uninsured or poor can't easily receive organs, they do donate them: As many as 25 percent of organs come from the uninsured, according to estimates by the authors of "Health Insurance and Cardiac Transplantation: A Call for Reform."
Or, in other words, as the report states: "Individuals donate their hearts, although they themselves would not have been eligible to receive a transplant had they needed one."
But whether the organ transplant system is fair or not depends on whom you ask.
Most bioethicists say the organ transplant system should be "equal opportunity" -- that anyone who is willing to donate should be eligible for a transplant themselves, regardless of the ability to pay. But some say the health care system is full of similar examples in which either the poor or the rich (but mostly the rich) are at an advantage and transplants are just a small part of a bigger problem.
The 'Wallet Biopsy'
To find matching donor organs, transplant centers rely on the United Network for Organ Sharing, or UNOS, a nonprofit organization that maintains a nationwide patient waiting list. Organs are then typically dispensed to the sickest patients or to those who have been waiting a long time.
UNOS maintains the list, but it's left up to 256 organ transplant centers across the United States to decide who gets on the list. Each center sets its own criteria, which often include the patient's ability to pay.
Laura Siminoff, a bioethicist, called this the "wallet biopsy," during which a person's financial standing comes under scrutiny.
"Every transplant center can do what they want," said Siminoff, who directs the bioethics program at Case Western University and is a board member of the Minority Organ Tissue and Transplant Education Program in Cleveland. "Centers have different practices. And if you're a well-to-do patient, you can shop around to centers. But if you don't have any money, you will go wherever is closest, and their policies are what you are stuck with."
Trying to Help the Poor
Thankfully, not all transplant centers turn away uninsured patients, pointed out Mary Simmerling, a bioethics fellow at the MacLean Center for Clinical Medical Ethics at the University of Chicago. She also runs a regional ethics consortium on organ transplants.
"Some [centers] have the luxury of really helping their transplant candidates to pay for the medications," she said, referring to the anti-rejection drugs that must be taken post-transplant and can sometimes cost more than the surgery itself.
The staff at the University of Michigan Transplant Center tries to help uninsured patients find a way to pay, said Dr. Jeffrey Punch, director of the transplant center. For some patients, financial assistance through Medicare or Medicaid can be arranged, although there are income limits.
"At our transplant center we have evaluated thousands of patients for liver transplantation, and we virtually never do a transplant without a plan for how it will be paid for," he said. "But we have only very rarely turned down a patient because of lack of insurance. In virtually all circumstances, the patient can arrange coverage of some sort."
However, because there is little governance over the transplant centers, it is not known how many people receive care like that at UMich or are turned away because of a lack of money, said Dr. Mark Drazner, a cardiologist at the University of Texas Southwestern Medical Center.
A Lack of Data
To get a clearer picture of the problem, Drazner and the other authors of "Health Insurance and Cardiac Transplantation" set out to compile data on organ transplant recipients and donors to see how many were uninsured.
But they didn't find any nationwide data, so they relied primarily upon a database of 420 families of organ donors, known as the National Study of Family Consent to Organ Donation. Siminoff conducted it .
In her survey of hundreds of Pennsylvania and Ohio families, 23 percent of organ donors were uninsured. She believes that a national survey would produce a number similar to that.
But her database is not enough to make that assertion, Punch said.
"The article ... merely assumes that everyone without health insurance cannot get a transplant. They quote four references to this point, none of which offer empirical evidence to their assertion," Punch said of the paper.
Also, he said it is not fair to compare the ability to donate organs with the ability to receive organs.
"Donating organs has no risk, damages no party and causes no problem with any large-scale religious communities. I agree entirely that the uninsured people in our country are a huge public problem, but I disagree that this can be used to indict the practice of organ donation as unfair."
Siminoff feels a bit differently.
"From a very clinical point of view, you can ask what is the difference if the donor is dead? Except as a society we don't view dead people as garbage. People have very definite feelings about how dead bodies should be treated and what they represent," she said. "Families [of donors] can be harmed if they felt the person was desecrated or not treated with respect. It could have irreparable damage."
Looking at the Decisions
For patients like Regions, these are nominal concerns. His failing heart, and lack of health care, takes precedent. At the moment, he's not sure what he's going to do. He visits online support groups and works as a photographer when he has the energy.
But after researching what it would take to have a transplant, he said that any measure taken to help the uninsured should include the enormous cost of immunosuppressant medications that people have to take for the rest of their lives after a transplant.
"The aftermath of the heart transplant, or any transplant, would cost more than the actual surgery itself," Regions said, adding that people who have reasonably good health insurance are still burdened by the cost of medication.
Plus, Siminoff noted, even having private health insurance doesn't make this issue go away.
"Health insurance comes and goes in this country, and some of the people [who receive transplants] are never able to go back to work full time and [they] lose health insurance," Siminoff said.
This sometimes forces people to stop taking the medication, putting them in the same poor health they were in before the transplant, Simmerling, the bioethicist, said.
"We really tend to think of transplants [and the organ transplant list] as different -- it's held up as this oasis of fairness and neutrality," Simmerling said. "But when you really start to look at how decisions are made it has a lot to do with socioeconomic status."
No Quick Solutions
While this is probably correct, some said the organ transplant system is no less fair than other areas of medicine or life in general. Put another way: Being poor is not easy.
"The primary source of inequity here is the failure to provide universal insurance coverage for all citizens or residents," said Norman Daniels, a professor of population ethics at the Harvard School of Public Health. "Remember, we are the only industrialized country to fail to do that."
Family law professor Timothy Jost agreed.
"It is unethical not to provide heart transplants for the poor, but only because it is unethical to deny the poor health care generally," said Jost, at the Washington and Lee University School of Law in Lexington, Va.
Drazner and the other study authors do not disagree with this notion. But they hope that the report at least spurs interest in the creation of a national registry that tracks that and other important information about donors and recipients.
"It's good to have all the players involved to address the situation and be aware of the financial aspects that need to be considered," he said.
Tom Mayo, a Southern Methodist University bioethicist who helped write the report, said the enormous cost of organ transplants means they can't be excluded from any debate on national health care. At the very least, he hopes the report will raise that concern among policymakers.
"How much of a health care budget should go into a transplant budget?" he said. "This opens the door to a much broader debate. This is an area where line drawing has been done and will continue for the indefinite future."